Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten-Free Symptoms - Is This Normal Recovery?


CantWeight

Recommended Posts

CantWeight Rookie

hi, I'm new here and newly diagnosed with gluten intolerance. I've been gluten-free and dairy-free for about one month with only a couple of reactions when dining out because they served me something exposed to gluten. I already eat a low-carb diet so I don't even eat gluten-substitute foods like bread, snacks, etc. mostly just proteins and vegetables. For the last couple of years (or longer, don't know) I was pretty constipated but for about the last month (since gluten-free) I have had diarrhea and felt fatigued. Is this normal in the recovery process? I'm very overweight and been trying to lose weight and haven't been able to lose one pound in months. Arg!

I haven't yet seen a specialist, I was diagnosed by my endocrinologist, so I know just about nothing. Any books you could recommend?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CantWeight Rookie

Am I posting this is the wrong place? It had loads of views but no response :(

hi, I'm new here and newly diagnosed with gluten intolerance. I've been gluten-free and dairy-free for about one month with only a couple of reactions when dining out because they served me something exposed to gluten. I already eat a low-carb diet so I don't even eat gluten-substitute foods like bread, snacks, etc. mostly just proteins and vegetables. For the last couple of years (or longer, don't know) I was pretty constipated but for about the last month (since gluten-free) I have had diarrhea and felt fatigued. Is this normal in the recovery process? I'm very overweight and been trying to lose weight and haven't been able to lose one pound in months. Arg!

I haven't yet seen a specialist, I was diagnosed by my endocrinologist, so I know just about nothing. Any books you could recommend?

gary'sgirl Explorer

I don't think you posted in the wrong place, sometimes people don't know what to answer or maybe just not the right people read it yet. :rolleyes:

I haven't gotten my hands on any books yet, but I want to and have been thinking of posting a question myself about recomended reads soon.

I think your experience is pretty normal. Many people go through a withdrawal period from the gluten and have some new symptoms - like you describe - for a while. It's different for everyone. The D could be your body cleaning itself out after being constipated for years. The fatigue I think is really common for any drastic change and your body may just be craving a lot of rest to help it recover more quickly now that you have taken the gluten and dairy out of your diet.

Also, keep in mind that a lot of people have to cut out other foods for a while because they are hard to digest or eritate the intestinal walls.

I have had to go off of nightshades, all meat (i can eat some fish), corn, rice, and nuts to name a few. I'm hoping that I will be able to add most of those back in after my gut heals. I am trying rice and corn a little again, but I think I may have to take it back out.

Anyway, keep reading this site - it has some of the best info out there. You can look up other threads that people have started and read some of the articles and lists posted on the sight.

I hope you feel some encouragement about this soon.

Sarah

sa1937 Community Regular

I haven't gotten my hands on any books yet, but I want to and have been thinking of posting a question myself about recomended reads soon.

A book I would highly recommend is Celiac Disease: A Hidden Epidemic by Dr. Peter Green, Director of the Celiac Disease Center at Columbia University (newly updated early this year). It covers a lot of info from a very knowledgeable doctor.

GFLindsey Explorer

I'm not really sure what normal symptoms are, but I can tell that I have been gluten free for 3 months and I still don't feel great. I used to get terrible diarrhea and that has gone away -- along with my mouth ulcers and the ringing in my ears. My new symptoms are extreme bloating and nausea after eating.

I would suggest Gluten Free Living for Dummies. I found it really helpful and I got it online for 10 bucks! It helps with all of the hidden sources of gluten. Also, read as much as you can on this site. I learned a lot about the diet -- but it takes time and mistakes. (For example, I was making myself extremely sick by using hand sanitizer before each meal that had tocopheryl acetate -- which had wheat in it. WHO KNEW?!?)

I hope you get to feeling better soon. Are you considering seeing a specialist eventually? I finally had an appointment with a GI doc who specializes in several diseases including Celiac. Totally worth the wait and the money! He really helped me feel like I am getting on the right track to a healthy lifestyle.

Best of luck to you.

Dace Rookie

You got some good input already about books and such, but I would like to address diet.

You mention being low carb and that the bulk of your diet is protein and veg.

I have a couple questions and then I will give you some feedback, ok?

What does your typical day's food intake look like, what exactly did you eat today or on a typical day?

How long have you been low carb? and specifically what foods do you avoid (besides dairy and gluten)?

Celiacs/gluten intolerance aside, sometimes it takes your body time to recover from a higher carb lifestyle and can take a while to start seeing results, my Hubby is gluten intolerant and cut out most refined carbs in Jan.....it has only been in the last 6 weeks that he has started to see steady weight loss....so hang in there!

lucia Enthusiast

hi, I'm new here and newly diagnosed with gluten intolerance. I've been gluten-free and dairy-free for about one month with only a couple of reactions when dining out because they served me something exposed to gluten. I already eat a low-carb diet so I don't even eat gluten-substitute foods like bread, snacks, etc. mostly just proteins and vegetables. For the last couple of years (or longer, don't know) I was pretty constipated but for about the last month (since gluten-free) I have had diarrhea and felt fatigued. Is this normal in the recovery process? I'm very overweight and been trying to lose weight and haven't been able to lose one pound in months. Arg!

I haven't yet seen a specialist, I was diagnosed by my endocrinologist, so I know just about nothing. Any books you could recommend?

_____________________________________________________________________

I'm new as well, and so struggling through the process of going gluten-free. It's been about 5 weeks for me. It is incredibly frustrating and slow.

I've already identified several times when I was "glutened" accidentally - the first time by a barley grain coffee substitute, and the second by a bottle of "superfood" juice that included wheat grass. A third time I came down suddenly with symptoms again, but couldn't identify the source. Everytime I've been gluttened, I've suffered another 5 days with GI symptoms. It's crazy!

I went through gluten withdrawal - very scary! I had headaches, night sweats, low blood pressure so I felt freezing cold, debilitating tiredness.

When my GI symptoms resolve, I still suffer painful neuropathy, dizziness, brain fog, and fatigue. Additionally, I newly am suffering insomnia (no idea where that came from).

I pretty much have spent the past 5 weeks on the couch, same place as I spent the last 3 months before that. haven't had an official diagnosis. I just have to believe there's an end to all this. Everyone at celiac.com is helping tremendously : )


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
one more mile Contributor

try to see what you have added to your diet. I found when I went of Gluten I added soy. soy gives me DH. So to corn chips.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.